Sunday, November 24, 2013

Kidney Dialysis: Medicare Will Phase in Cuts

Kidney Dialysis Payment Challenge

From SacBee.com, Sacramento Bee, California, by Kidney Care Partners

Nation's Kidney Care Community Says Medicare Rule Goes Too Far, Cuts Too Deep

Coalition Concerned That Phase-In Will Not Mitigate Impact on Patient Access and Care Quality  

WASHINGTON, Nov. 23, 2013 /PRNewswire-USNewswire/ -- The nation's kidney care leaders today expressed disappointment that the Centers for Medicare and Medicaid Services' (CMS) decision to cut Medicare payments for dialysis by 12 percent – or nearly $30 per treatment – over three to four years will have a negative impact on vulnerable dialysis patients by threatening access to and limiting options for quality care.

The final Medicare rule does not change CMS' original proposal, issued in July, which also includes additional cuts of 12 percent.

According to Kidney Care Partners (KCP), a coalition of patients, physicians, nurses, providers, and manufacturers, the rule deals a significant blow to an already fragile system by ultimately reducing Medicare payments to a level that will not cover the cost of care for individuals on dialysis.

"Phasing in this cut does not solve the problem," said KCP Chairman Ron Kuerbitz. "Instead, it only delays the inevitable harm that will come as a result of failing to cover the cost of care. Simply put, this model is unsustainable."

As a result of the rule, KCP said, providers and physicians will face difficult choices regarding staffing, facility hours, quality improvement interventions, and ultimately whether an entire facility can be kept open to service a community. In turn, Medicare beneficiaries could face reduced access to care. [Read more]
Read more here: http://www.sacbee.com/2013/11/23/5939540/nations-kidney-care-community.html#storylink=cpy


Read more here: http://www.sacbee.com/2013/11/23/5939540/nations-kidney-care-community.html#storylink=cpy


Read more here: http://www.sacbee.com/2013/11/23/5939540/nations-kidney-care-community.html#storylink=cpy



From MedCityNews.com, by Reuters, 2013

Dialysis operators dodge proposed 9.4% rate cut from CMS

(Reuters) - Medicare, the U.S. government healthcare program for elderly and disabled people, will leave its overall reimbursement rates for kidney dialysis treatment unchanged for next year, and said it will take three to four years to implement a mandated adjustment to its base rates.

The 2014 payment rates are much less onerous than the 9.4 percent cut proposed by the agency in July.

The rates, announced on Friday by The Centers for Medicare and Medicaid Services (CMS), the federal agency that sets reimbursement rates for Medicare, come on top of a 2 percent reduction that kicked in earlier this year under automatic cuts to federal spending.

CMS said the final rule also finalized a 50 percent increase to home dialysis training payment adjustments. The agency said the rates reduce Medicare payments by 1.05 percent - the combined effects of an increase in the home health payment update percentage of 2.3 percent, offset by a decrease of 2.7 percent - the result of adjustments required by the Affordable Care Act - and a 0.6 percent decrease due to a refinement of the payment system.

Fresenius Medical Care AG, or FMC, and DaVita Healthcare Partners Inc are the largest dialysis providers in the United States.

FMC operates more than a third of the dialysis treatment centers in the United States and Medicare contracts account for about 30 percent of its revenues.

The industry had lobbied for more moderate cuts, arguing that lowering payments by 9.4 percent would force smaller operators out of business, hitting patient care mainly in rural areas.

The proposed reimbursement cuts for dialysis providers mainly reflect a drop in the use of the expensive hormone erythropoietin, or EPO, to treat anemia, a common side effect associated with dialysis.

Lower use of EPO came as a result of medical studies showing the dangers of overuse and after a new reimbursement regime was introduced in the U.S. that encouraged prudent use of EPO and more use of cheaper drugs that can partially substitute EPO.

FMC, indirectly controlled by a German charitable trust, derives about two-thirds of its total revenues from North America.

FMC launched a cost-cutting program at the beginning of the year in response to U.S. austerity measures, but it has not provided details.

(Reporting by Deena Beasley, additional reporting by Ludwig Burger; editing by G Crosse)


Kidney Donation Lessons

From NationalPost.com, by Robyn Urback, Canada Financial Post


When Canadians must resort to online ads to find themselves human organs for transplant, we might have a bit of a problem on our hands. Yet a Nova Scotia man took to online classifieds this month in a desperate attempt to find himself a new kidney. Ken Wilkie, who has polycystic kidney disease, posted an ad on Kijiji on November 7 under the title “Boost Your Karma.”

“I am a hard-working father of two, I don’t drink, smoke or do drugs,” Wilkie said in the post, “so I promise I will look after your kidney.” Wilkie received about 40 replies from people willing to get tested to see if they are a match before the ad was removed in accordance with the site’s terms of use.

Wilkie’s disease is genetic, meaning that his immediate family members are ineligible to donate. He did have a donor lined up, but tests revealed that the would-be donor had cervical cancer. Wilkie jokingly talked about putting an ad on Kijiji after receiving the news, and he decided later to follow through...

...In 2008, the Israeli Knesset passed new organ donation laws that gave transplant priority to patients who had signed their own donor cards. Living donors were also offered new compensation for lost wages and medical expenses. The change was accompanied by a massive public awareness campaign, which resulted in 70,000 new donors signing up in 10 weeks. According to Israel’s National Transplant Center, the number of transplants increased dramatically in 2011 — 68% over the previous year. That figure waned from 2011 to 2012, though Israel’s Health Minister Yael German is now pushing for the country to adopt an opt-out system.

Israel’s priority system should serve as a model to Canadian legislators in terms of exploring models beyond altruistic donation. Good karma is great, but a promise to jump the line should the potential donor become the recipient is even better — especially since Canada doesn’t grapple with the same sort of religious barriers to donation as does Israel. At the very least, it certainly beats Kijiji. [Read more]


PKD Research

From SceinceDaily.com

'Mini-Kidney' Structures Generated from Human Stem Cells for First Time

Diseases affecting the kidneys represent a major and unsolved health issue worldwide. The kidneys rarely recover function once they are damaged by disease, highlighting the urgent need for better knowledge of kidney development and physiology.

Now, a team of researchers led by scientists at the Salk Institute for Biological Studies has developed a novel platform to study kidney diseases, opening new avenues for the future application of regenerative medicine strategies to help restore kidney function.

For the first time, the Salk researchers have generated three-dimensional kidney structures from human stem cells, opening new avenues for studying the development and diseases of the kidneys and to the discovery of new drugs that target human kidney cells. The findings were reported November 17 in Nature Cell Biology.

Scientists had created precursors of kidney cells using stem cells as recently as this past summer, but the Salk team was the first to coax human stem cells into forming three-dimensional cellular structures similar to those found in our kidneys.

"Attempts to differentiate human stem cells into renal cells have had limited success," says senior study author Juan Carlos Izpisua Belmonte, a professor in Salk's Gene Expression Laboratory and holder of the Roger Guillemin Chair. "We have developed a simple and efficient method that allows for the differentiation of human stem cells into well-organized 3D structures of the ureteric bud (UB), which later develops into the collecting duct system."

The Salk findings demonstrate for the first time that pluripotent stem cells (PSCs) -- cells capable of differentiating into the many cells and tissue types that make up the body -- can made to develop into cells similar to those found in the ureteric bud, an early developmental structure of the kidneys, and then be further differentiated into three-dimensional structures in organ cultures. UB cells form the early stages of the human urinary and reproductive organs during development and later develop into a conduit for urine drainage from the kidneys. The scientists accomplished this with both human embryonic stem cells and induced pluripotent stem cells (iPSCs), human cells from the skin that have been reprogrammed into their pluripotent state. [Read more}



From HealthCanal.com, By Duke Medicine News and Communications - DURHAM, N.C

Early Data Show Potential for Investigational Bioengineered Vessel as Dialysis Graft

An investigational, man-made blood vessel used in vascular grafts for kidney dialysis patients may potentially show encouraging early results among study patients in Poland, according to preliminary data reported Wednesday by a researcher at Duke Medicine.

Presented at the American Heart Association Scientific Sessions meeting in Dallas, the early findings of this interim patient data track 28 hemodialysis patients who received grafts using the investigational bioengineered vessel during a multi-center study launched in Poland last December.

The investigational bioengineered blood vessel, designed to be the first off-the-shelf product incorporating human tissue in the bioengineering process, provided blood flow in 100 percent of the study patients, reported Jeffrey H. Lawson, M.D., Ph.D., professor of surgery and pathology at Duke University School of Medicine. Eight patients later lost blood flow, but it was restored with interventions in each case.

Lawson said there is a significant need for alternative types of vascular technology. Current synthetic vascular grafts used for hemodialysis access provide initial blood flood in less than 50 percent of patients at six months, and with secondaryinterventions the success rates rises to 77 percent, Lawson said.

Preliminary interim analysis of the investigational bioengineered vessel currently being used for dialysis among the Polish patients has resulted in no infections to date, no immune reactions and no sign of structural degeneration.

“These early data are very encouraging,” said Lawson, who performed the first U.S. implantation of the blood vessel in June in a patient with end-stage kidney disease. [Read more]

Sunday, November 17, 2013

Comics for PKD, Innovative Fundraising

PKD Fundraising

From TorontoSun.com, Toronto, Canada, By MARYAM SHAH ,TORONTO SUN

Father hopes to raise money for kidney disease research through comics

Dressed in Converse Superman sneakers, Jarrett Osborne admits he has a bit of a saviour complex.

The urge to save is fitting since his youngest son Harrison was born with polycystic kidney disease 19 months ago.

“Both his kidneys are enlarged,” Osborne, 38, said. “They’re riddled with cysts.”

Curly brown hair frames Harrison’s big dark eyes. He calmly sits in his father’s lap inside their Milton home, reaching out to touch a piece of paper or a cellphone. He looks and acts like most children his age – bright-eyed, curious, playful.

You can hardly tell he’s lost 50% of the function in one kidney. Or that he has grown so weary of people in white lab coats, he screams every time he enters a doctor’s office.

Osborne talks matter-of-factly about the cysts on Harrison’s kidneys, which are “compressed like an accordion.”

“It’s a hidden disease,” he said.

Recessive polycystic kidney disease is a rare form that affects 10-40 children in Canada each year.

It has no cure.

All the family can do is monitor his diet, especially his liquids, and keep an eye on his blood pressure. There’s a chance his kidneys may fail later in life.

Enter six-year-old Clark Kent Osborne, Harrison’s older brother, who’s been kept in the dark about his brother’s illness.

Like his comic book namesake, Clark Kent may one day be the superhero Harrison needs, if he’s required to donate a healthy kidney to save his brother’s life.

“I was under the illusion for a little while that they’ll just get better,” Osborne said. “Or that, if they ever did fail, you just get a transplant and that would get the disease better. But right now there’s no cure for the disease. The disease stays.”

He and his wife Angie Camalleri, 37, are teachers. Harrison is their second son, born on March 8, 2012. They discovered his disease through prenatal ultrasounds.

Harrison wasn’t even born when his kidneys started to develop cysts and deteriorate. His parents were told they each carried the recessive gene for their son’s ailment.

“There’s no way, are you kidding me?” Camalleri said, recalling her first reaction to the news.

They were also told they were lucky because five years ago, ultrasounds would not have caught it, she said.

A stressful pregnancy eventually culminated in an emergency C-section on – Osborne notes ironically – World Kidney Day.

Osborne and Camalleri show no signs of bending under the pressure of constantly checking Harrison’s diapers to ensure he’s urinating properly, or sometimes syringing water down his throat to keep his fluid intake normal.

Angie doesn’t blink when Harrison trips on the carpet in her upstairs living room.

“He’s tough, believe me,” she said as he picked himself up.

One in 10 Canadians suffer from some form of kidney disease, according to the Kidney Foundation of Canada. Every day 15 people on average are told their kidneys are failing, national executive director Paul Shay said.

Since symptoms don’t manifest until later, “most of the people who have kidney disease don’t even know they have it,” he said.

One of the foundation’s ongoing concerns is raising both awareness and cash, he added.

“For a number of reasons, cancer and heart disease tend to be higher up in the public awareness,” Shay said, possibly because they are “more dramatic” than kidney disease, which is often called a silent killer.

The foundation hopes to raise $50 million over the next five years and Osborne wants to “crush” that goal.

As an illustrator, he always knew what he wanted to do with his comic art: help a worthy cause.

After Harrison’s birth, “it came together” for him, he said.

“The cause was easy for me,” Osborne said.

He’s now trying to crowdfund $30,000 in 30 days onhttp://startsomegood.com/popremedy, a company he created that runs on the basic premise of creating comic strips for a cause.

“If everybody’s reading something they enjoy, and you can connect that to a charity, we know what happens,” Osborne said. “It becomes just a monster in education and awareness.”

There are 11 days left to reach his goal. The funds will cover the cost of producing and marketing a comic strip collection for print and online, he explained.

“Create product, create merchandise, sell it and have proceeds of that go back to the foundation,” he said.

He hopes other artists will join him to fundraise for their respective causes.

He also remains optimistic about Harrison.

“I want him to be healthy and not in pain and to not be afraid of his disease,” Osborne said. “I want him to embrace the fact that education is power and that you can inspire people to do great things.

“Just because he’s got kidney disease doesn’t mean he’s going to live any less than anybody else.”


From LimaOhio.com, Kalida, Ohio, by Lance Mihm


Life has forced 17-year-old Luke Kaufman to face many challenges early in life. Thankfully, he has an entire community willing to face the challenges right along with him.

Luke was born with polycystic kidney disease, which causes him to have an enlarged kidney, full of cysts. This led to decreased functioning. The disease now has caused him to have problems with his liver.

On Saturday, the community will rally behind Luke and his family by hosting an all-day benefit at the Kalida Knights of Columbus Hall.

Health insurance has not been an issue, as the family had the appropriate medical coverage. Frequent doctor’s appointments and hospital stays have caused his parents, Darren and Kathy Kaufman, to miss countless hours of work.

“We have had a lot of unpaid time off,” Kathy Kaufman said. “We also have a lot of prescription costs. He is on 15 medications that he takes two to three times a day. The prescription costs do not go towards our deductibles.”

Luke had his first kidney transplant in January 2001. His father was the donor. Problems caused the removal of his spleen about a year later.

Luke at first did well, but problems again began. In July of 2012, he had a second kidney transplant. His mother proved to not be a match, so the family participated in a program where they were paired with three other families. Luke’s mother donated a kidney to another patient involved with the group, while Luke received one from another parent.

He had two bouts of septic shock and two hospital stays in January and February of this year. Doctors originally were unable to determine the cause. After another lengthy stay in the hospital from July to September, doctors determined Luke had congenital hepatic fibrosis and needed a liver transplant.

Kathy Kaufman said Luke is now registered at both Cincinnati Children’s Hospital and Children’s Hospital of Pittsburgh for a transplant.

“He has spent 85 days total in the hospital this year,” Kathy Kaufman said. “He is now registered for a transplant at both hospitals. The liver will come from a deceased donor. We don’t really know when it will be. It could be tomorrow. It could be a year.”

Despite his illnesses, Luke remains optimistic. He is finishing high school through online courses and staying as healthy as possible until a matching liver is available.

“He has good and bad days,” Kathy Kaufman said. “The past 10 days have been a little rough. He has had some high fevers and some pain, but he has stayed out of the hospital. He is a very strong and resilient young man.”

The event will kick off with registration for a 10-kilometer run at 9 a.m., with the race beginning at 10 a.m. The hall will open at 11 a.m., and the OSU-Illinois game will be televised at noon. A photo booth will be available from 11 a.m. to 2 p.m., and children’s games will run from noon to 4 p.m.

A pork loin dinner will be available from 4 to 7 p.m. A raffle and silent auction on several items will be available all day, and a live auction will run from 7:30 to 8:30 p.m. A 50-50 drawing will be drawn at 7 p.m. A deejay will play music throughout the day, and a band will play immediately after the live auction.

“We are very humbled by the community, our family and our church and their willingness to do this,” Kathy Kaufman said.



PKD Treatments

From PRUrgent.com

Innovative Nephrologist Presents Overview of Potential Therapies for Polycystic Kidney Disease

Therapies for Polycystic Kidney Disease (PKD) have eluded the medical community and PKD patients for years. However, recent scientific studies have begun to yield promising results.

Can drinking more water slow the growth of renal cysts? Is Tolvaptan safe? These are among the questions PKD patients are asking themselves and it’s a good point in time to re-examine the current treatments and find out about the potential for more from innovative Canadian kidney researcher, Dr. Moumita Barua.

Dr. Barua completed her training in internal medicine and nephrology at the University of Toronto in 2009. From October 2009 to July 2013, she did a postdoctoral research fellowship at Harvard Medical School under the supervision of Dr. Martin Pollak (an expert in genetic studies of familial glomerular diseases). She now works with nephrologist Dr. York Pei at the Toronto General Hospital.

"Dr. Barua is expanding her clinical expertise in hereditary kidney disease (HKD) with the goal of applying her research methodologies more broadly. To support this endeavor, The PKD Foundation of Canada and Tuberous Sclerosis Canada Sclérose awarded Dr. Barua with the 2013-2014 Translational Research Fellowship in HKD," noted Shiona Mackenzie-Morrison, Hamilton Chapter Coordinator of the PKD Foundation of Canada.

Because diverse genes cause renal cysts and as there often is multi-organ involvement with PKD, more than one therapeutic approach may be required to treat it.

"Anyone interested is welcome to join us at St. Joe's on November 17 for Dr. Barua's overview of autosomal dominant Polycystic Kidney Disease, with a specific focus on current and future therapies," Mackenzie-Morrison added.

The public presentation is part of an ongoing series of free 2-hour informational support meetings hosted by the Hamilton Chapter of the PKD Foundation of Canada six times a year. Registration is not required. On-site parking (payment required) and street parking (free) is available.

PKD is a genetic disorder in which clusters of cysts, noncancerous sacs containing water-like fluid, primarily develop within the kidneys. The disease also can cause cysts to develop in the liver and other organs. High blood pressure and kidney failure are common problems for people with PKD.

More information is available on the PKD Foundation of Canada website.


Sunday, November 10, 2013

Process of Donating a Kidney Does Not Have to be Difficult

Gift of Life

From PennLive.com, covering Central PA, by Carolyn Kimmel, Special to PennLive

A Mechanicsburg family struggles with rare disease requiring multiple kidney transplants

The thought of one organ transplant can be overwhelming for a family, but what about four? For the Lathrop family, that’s reality. Four of the five of them has had or will need a kidney transplant.

“It’s hard to realize that all my kids have this. It’s been hard. I won’t deny that,” said Sharon Lathrop, the only member of the Mechanicsburg family who doesn’t need a new kidney. “But it’s so much better for everyone involved to have a positive attitude.”

Her husband, Steve Lathrop, 66, has polycystic kidney disease, or PKD, a genetic condition in which clusters of cysts develop that overtake the function of the kidneys, making kidney failure inevitable. The only treatment for PKD is a kidney transplant.

The Lathrops have autosomal dominant PKD, which means there is a 50 percent chance that a parent will pass the mutation to a child. In the Lathrop family, there was 100 percent transmission – all three children have the disease. (The other form of PKD is autosomal recessive, which is rare.)

“You have thousands of filters in the lining of the epithelial cells in your kidney, which are called nephrons. Most people have a genetic shut-off to stop the lining from growing, but when you don’t, these fluid-filled cysts develop, said Sarah Lathrop.

“At a certain point, the nephrons stop filtering waste out of the blood, toxins build up and it can kill you,” said the 37-year-old Grantham resident, whose training as a physician’s assistant helped her understand the disease that affects her and her family.

Sarah Lathrop is anticipating the start of dialysis in the next six months. Dialysis is begun when kidney function is at about 10 percent; hers is functioning at 15 percent.

Her older brother, Jeff Lathrop, 41, who lives in Ohio, had a kidney transplant in July after being on dialysis for six months. A graduate of Messiah College in Mechanicsburg, Jeff received his kidney from a college buddy...

A kidney from a live donor will last 20 to 25 years whereas a cadaver kidney will last about 10 to 15 years, said Dr. Harold Yang, medical director of the transplant program at PinnacleHealth System in Harrisburg.

Recipients of live donor kidneys also usually need smaller doses of immunosuppressant medications, leading to few side effects and complications.

There’s a good chance that all the Lathrops will need two, even three, kidney transplants in their lifetimes.

“I know what’s coming down the pike; it’s called a big train,” Sarah Lathrop joked. “You have to have a sense of humor about it.”

While she takes the disease in stride, she is worried for her father. “My fear is he won’t be here . . . of 100 people who start dialysis, only 34 are alive five years later,” she said. “My dad has been such a rock star handling all this with such a positive attitude and a core of strength so that it’s not scary for us.”
Recently, she organized an event called “Dare to Donate Times 3” to collect blood, sign up kidney donors and take cheek swabs for bone marrow and stem cell registries. More than 200 people turned out and donors gave 165 pints of blood at the event, which was held at the family’s home church, West Shore Evangelical Free Church in Mechanicsburg, she said. [Read more]


From PennLive.com, covering Central PA, by Carolyn Kimmel, Special to PennLive

Process of donating a kidney doesn't have to be difficult


Sarah Lathrop thinks it’s just simple lack of education.

“I think people don’t consider donating an organ because they don’t know the need. There are 5,400 people in Pennsylvania who need a kidney right now,” said the 37-year-old Grantham resident who has polycystic kidney disease and will need a kidney transplant.

Statistics on organ need are pretty eye-opening. Here’s a sampling from the U.S. Department of Health and Human Services:

• A new person is added to the national waiting list for organs every 10 minutes.

• Each day, an average of 79 people receive organ transplants. However, an average of 18 people die each day waiting for transplants that can't take place because of the shortage of donated organs.

• Last year alone, organ donors made more than 28,000 transplants possible. Another one million people received cornea and other tissue transplants that helped them recover from trauma, bone damage, spinal injuries, burns, hearing impairment and vision loss.

Most people can be a donor

Just about anybody is a candidate to donate a kidney, according to Dr. Harold Yang, medical director of the transplant program at PinnacleHealth System in Harrisburg, where 70 to 80 kidney transplants are done annually.

Donors must be at least 18 and healthy, with no high blood pressure, diabetes or history of cancer, he said.

The process of donation begins with a comprehensive medical history to see if the candidate is a good one. The donor must speak with the living donor advocate to make sure of the reasons for the donation and awareness of risks.

Next, blood work and a physical exam must be done to measure the function of the kidney. The donor’s blood type and tissue type must be immunologically compatible, Yang said.

Donors spend two days in the hospital for recovery and can expect to be off work for three to four weeks, Yang said. During the surgery at PinnacleHealth, the transplant team works sequentially, first taking the kidney from the donor and finishing that surgery and then starting surgery on the recipient, Yang said.

Almost all the costs associated with donating a kidney are covered by the recipient’s insurance.

Sarah Lathrop confesses she is frustrated with people who won’t consider donation.

“My focus is on education, trying to get people to put their fear aside,” she said. “People say, ‘What will happen if something happens to my other kidney?’ People who donate go to the top of the waiting list if they need a kidney later. And, people don’t know it, but you can live with just 20 percent kidney function.”


PKD Fundraising

From MoultrieNews.com, Charleston, SC area

Charleston families come together to end kidney disease

This November, Kate Williams and thousands nationwide will come together and walk in support of those affected by polycystic kidney disease (PKD). PKD is one of the most common, life-threatening genetic kidney diseases affecting thousands in America and millions worldwide. It is the fourth leading cause of kidney failure, and there is no treatment or cure.

The 2013 Charleston Walk for PKD is planned for Sunday, Nov. 10 at Fort Dorchester High School with PKD patients, their families, and friends fundraising and walking together to unite to fight and end PKD. Registration is at 11:30 a.m., with the Walk beginning at 1 p.m.

PKD causes cysts to grow on the kidneys, eventually leading to kidney failure. Parents with the disease have a 50 percent chance of passing it on to each of their children. Currently, dialysis and transplantation are the only treatment options. Approximately 10 percent of the people diagnosed with PKD have no family history of the disease, with PKD developing as a spontaneous (new) mutation. Once they have it, they have a 50 percent chance of passing it on to each of their children. Learn more at pkdcure.org.

Kate Williams and her 2-year-old son, Owen, have PKD. “Before my son, Owen, and I were diagnosed with PKD, I had never heard of the disease,” Kate said. “Participating in the Walk has been a wonderful way for us to meet others in the PKD community, and the level of support and caring has been amazing. We walk in the hope that raising awareness and research funds will lead to a cure for PKD.”

The annual Walk for PKD is the signature fundraising and public awareness event for the PKD Foundation and is the largest gathering of PKD patients, family, friends, and supporters; nearly 10,000 strong. More than 50 Walks occur every year in cities across the nation. Since 2000, the Walk for PKD has raised more than $20 million. This money helped get closer to finding treatments and a cure, and provided education to those who have nowhere else to turn. Register for the Charleston Walk for PKD at walkforpkd.org/charlestonwalk.


From PutnamSentinal.com, Putnam County/Ottawa, Ohio


A benefit is planned for Luke Kaufman, Kalida, on Saturday, Nov. 16, at the Kalida K of C Hall. Luke is 17 years old and has had two kidney transplants and is awaiting a liver transplant. He has had numerous hospital admissions this year. Family and friends of Luke's family are planning this benefit to assist with medical expenses related to multiple hospitalizations and an upcoming liver transplant.
Luke was born Feb.27,1996 and diagnosed with Auto Recessive Polycystic Kidney Disease. (ARPKD).
Luke also has Congenital Hepatic Fibrosis with Esophageal Varices, which is a liver disease that accompanies his kidney disease. On January 30, 2001, Luke received a donated kidney. The following year, Luke had his spleen removed. In addition, he has had pancreatitis, mycoplasma pneumonia, and many other unidentified infections.
On July 25, 2012, Luke received a second kidney transplant from Kendra, his non-related, living donor. On Dec.31, 2012, Luke became suddenly ill. He had septic shock with multi-system failure. He was on a ventilator, dialysis and every type of support they could do for him in ICU at Nationwide Children's Hospital.
On Feb. 12, 2012, Luke again was admitted in septic shock. This time, no source was identified. In June, it was decided that Luke needed a biliary stent placed to help drain the bile. This was done in Cincinnati Children's Hospital, where his family was told on Aug. 8 that Luke needs a liver transplant. Luke has been evaluated at both Cincinnati Children's Hospital and the Children's Hospital of Pittsburgh, and is now on both transplant lists awaiting transplant.
The benefit itself will be a fun-filled day which will begin with a 5K race set to begin at 10 a.m. (registration begins at 9am), followed by the OSU football game, a pork loin dinner from 4 to 7 p..m, music, auctions and raffles. Food and refreshments will be available throughout the day. For more information, visit www.facebook.com/Lukesbenefit.


PKD Disease

From WEAU.com, Eau Claire, WS, by Megan Lowry

A look at Polycystic Kidney Disease

When a family member gets sick many times our first instinct is to step in help, but when a family is dealing with a genetic disease many times that's not an option.

One of the most common life-threatening genetic conditions is Polycystic Kidney Disease.

"There are a lot of things in my life that are perfect but then you have this one thing that affects you and you’re in a stalemate," Silas Cole said.

For twenty-two year old Silas twice a week time is kept through an IV.

“I’ve been on dialysis for 3 months now,” said Silas.

He was diagnosed with Polycystic Kidney Disease or PKD at age15. PKD is a genetic kidney disease that affects more than 600,000 people in the U.S.

The disease causes the kidneys to form cysts. “What happens is when the cysts start growing the normal kidney tissue dies off and you start losing kidney function because of that," Dr. Ibraheem Abbas with Mayo Clinic Health System said.

Doctors say a healthy kidney is about the size of a human fist but a kidney with PKD get a larger than a football and weigh more than 38 pounds.

“It’s a lifelong disease and can have multiple complications and affect multiple generations of a family,” said Abbas.

“It affects the way your family lives and it affects the way your family thinks,” Brenda Cole said.

Brenda has battled PKD for more than a decade. She has undergone two kidney transplants and hit the five year milestone since her last transplant this year.

“I did not know how sick I was until I had the transplant it changed my life,” said Brenda.

Brenda says her health is bitter sweet though as she waits for her son to get the same lifesaving gift.

“We have two kidneys we can survive with just one, and if I had a kidney I would give it but i don't,” Brenda said.

Silas starts the kidney transplant process this month but it could be years before his turn but he says however long or short the wait.

“I’m excited to see what i can do after this,” said Brenda.

Doctors say because PKD is a genetic disease if someone in your family is diagnosed it is important to get genetic screen to see if you too are at risk.

There is a fund set up with Associated Bank Called ‘The Silas Cole Benefit Fund’ to help with Silas with medical bills.

Sunday, November 3, 2013

Drug Advances Increase Kidney Transplant Opportunities

Kidney Transplants

From Philly.com, By Paul Jablow, For The Inquirer

Drug advances make kidney transplants between spouses more feasible

It was fall 1993, and Henri Gutner's kidneys were continuing to fail. He was always tired, his complexion was green, and he was sleeping as much as 20 hours a day.

"I had him maybe six hours a day when he was capable of doing anything," recalls his wife, Jeri.

With his kidney function down to 8 percent, Gutner, then 43, was told he was facing dialysis and the inevitable disruption it would bring to his - and his wife's - life.

"I said, 'There's no way I'm sending my young husband to dialysis,' " said Jeri Gutner, who is five years younger. "There has to be some way." There was. She donated a kidney to him. The operation at the Hospital of the University of Pennsylvania (HUP) was just the 21st kidney transplant performed there between persons not related by blood. "He came out looking like my husband," she said. The couple now travel, lead a normal life, and head the Keller Williams real estate office in Doylestown.


Since 1987, HUP surgeons have performed more than 150 spousal kidney transplants. Ali Naji, who heads the hospital's kidney transplant program and has performed many of them, says that "the love and affection between the spouses adds tremendous positive gratification." Spousal kidney transplants have been done at the rate of roughly 700 a year since the national Organ Procurement and Transplantation Network began keeping statistics in 2002.

"A lot of spouses see it as not just doing something for the other person, but as doing something for the relationship," says Carolyn Cristofalo, who works with donors at HUP. "And of course it might eventually lighten the burden on the caregiver. People want to move on with their lives together."

While blood relatives may often be the most compatible match, says Naji - who did not operate on the Gutners - advances in immunosuppression drugs have dramatically increased success rates for transplants between unrelated persons. [Read more]



From Courier-Journal, Louisville, KY, by Laura Unger (Note: story first published in February 2010)

Medical Breakthroughs | Stem cells may stave off transplant rejection

Two years ago, doctors gave Robert Waddell a choice — a kidney transplant or years of dialysis.

The 43-year-old Louisville father of four, whose kidneys were enlarged from polycystic kidney disease, chose the transplant. But he feared the possible side effects of a lifetime of anti-rejection drugs, including infection and cancer.

So he joined an experimental study that would allow him to taper off and eventually stop using those drugs.

The study, a collaboration between the University of Louisville and Northwestern University in Chicago, uses specially processed stem cells from a donor to help establish a "twin" immune system in the recipient that lets the body recognize a donated organ as its own.

Dr. Joseph Leventhal, director of the living donor renal transplant program at Northwestern, is working with U of L's Dr. Suzanne Ildstad on the study. They treated their first patient last year and ultimately hope to recruit up to 30 kidney transplant recipients.

"The results are very promising," Leventhal said. If they hold up, "it looks like this would be a safe, better approach for the large majority of people. ... It would radically transform transplants by eliminating the need for immunosuppressive drugs." [Read more]



From The Courier of Montgomery County, Conroe Texas News, by Kimberly Sutton


Halle Ludwig needs a kidney transplant. At age 11, this will be her second donated kidney.

Ludwig, a fifth-grader at Mitchell Intermediate, was born with autosomal recessive polycystic kidney disease. She has had more than 30 surgeries and received her mother’s kidney when she was about 3 years old, according to her mother, Christine Clinkenbeard, of The Woodlands.

“She has thrived during the past eight years and is a precocious and loving (child),” Clinkenbeard said in a letter written to the community for support. “And with your support, we can continue to see her grow into a generous, kind girl who wants to grow up to be a doctor in a children’s hospital.”

With her kidney now failing, Ludwig recently was recommended by Texas Children’s Hospital for another transplant, and testing for donors must begin immediately.

“She’s at 16 percent,” said Debbie Jaeger, a family friend. “We can use all help we can get to get her message out.” [Read more]


From WickedLocal.com, Medfield, MA, By Caitlyn McGoff


When Rosemarie Meuse retired to New Hampshire with her husband Philip this past January, she was ready to begin a new chapter of her life.

But by October, Philip had died suddenly of cardiac arrest and Rosemarie, who suffers from Polycystic Kidney Disease (PKD), had been told by her doctors that she could only survive for less than a year with her kidneys functioning the way that they were. Her husband, who was scheduled to be tested for compatibility, could no longer serve as a living kidney donor, leaving Meuse to spread the word of her need and depend on the kindness of others...

In order to continue functioning and not begin receiving dialysis treatments, Meuse must receive a kidney donation. Her two brothers each have one kidney. When one needed a donation for his own PKD, the other and only sibling without the disease became a donor. Meuse is on the waiting list for a kidney—her doctors at Brigham and Women’s Hospital in Boston have approved her as a transplant recipient—but the average wait is up to seven years. She added that a dialysis patient can only survive for five years. [Read more]
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Raising PKD Awareness

From Fox4KC.com, Kansas City
‘Cocktails for a Cure’ to benefit National PKD Foundation

Polycystic Kidney Disease is an incurable disease. But now,
30 years after the National PKD Foundation began in Kansas City, the foundation continues to raise awareness and funds for research and treatment.

Angela Connelly with the PKD Foundation and Jill Reister, a PKD patient, were guests on Tuesday’s FOX 4 Morning Show to talk about the work of the foundation and how they’re giving hope to PKD patients across the country.

If you would like to help in the fight against PKD, the foundation is hosting a Cocktails for a Cure event this Saturday, Nov. 2 at the Belvoir Winery in Liberty, Mo.

For more information, just go to the foundation’s website.


From Tuscaloosa News, Alabama, by Danielle Walker

Ujhazy raising awareness for PKD with marathon run

Not many people get the opportunity to run in the New York City Marathon, the world’s largest marathon.

“How many people can say they ran the NYC Marathon?” Tyler Ujhazy said.

Ujhazy, a University of Alabama graduate and Buhl native, got the chance of a lifetime when he was offered an entry to run in this year’s New York City Marathon, which is Sunday.

Ujhazy was offered a guaranteed entry into the race earlier this year from the Polycystic Kidney Disease Foundation. A few months earlier, Ujhazy found out his mother had been diagnosed with PKD. That was when he joined the foundation to learn more information about the disease and find ways that he could help his mom and others living with PKD.

“It wasn’t easy. You know, your mom telling you that she’s diagnosed with something,” Ujhazy said. “She wasn’t too sure exactly what it was, I wasn’t too sure. I was just kind of filled with emotion. Definitely not an easy moment.”

There is currently no cure or treatment for PKD except for kidney transplant or dialysis. PKD affects the kidneys and creates cysts on the organs. The kidneys can swell to the size of footballs. Ujhazy hopes through running, he can raise awareness about the disease so one day there will be more treatment options for those affected by the disease.

“I just want to raise awareness because before Mom called me to tell me she was diagnosed with it, I really had no clue what PKD was,” Ujhazy said.


From South Wales Argus, United Kingdom


THE PARENTS of a Risca baby who died just three days after his birth are campaigning to raise awareness of kidney disease in newborns.

Stacey and Ryan Jones, whose son Logan, died from polycystic kidney disease, have now received £2,700 towards charity polycystic kidney disease (PKD).

Born on October 31 2012, at the Heath hospital in Cardiff, Logan died on November 2 after his kidneys enlarged and cysts grew on them- resulting in his lungs not functioning properly.

The disease typically causes lung failure and other organs of the body not to work effectively. [Read more]


From NewsWise.com


Highlights
• Six leaders in the kidney health community are being honored by the American Society of Nephrology (ASN), the world’s largest organization of kidney disease specialists.
• The award winners will be honored at ASN Kidney Week, the world’s premier nephrology meeting. More than 13,000 kidney health professionals from around the world will gather in Atlanta on November 5–10.

More than 20 million Americans have kidney disease. [Read more]



PKD Treatments

From The Sacramento Bee, CA

3SBio to Develop DJ5 for Progressive Renal Failure in ADPKD Patients


3SBio Inc., a leading China-based biotechnology company focused on researching, developing, manufacturing and marketing biopharmaceutical products, today announced the acquisition of patents for DJ5, a novel non-TZD PPARgamma agonist with potential to retard progressive renal failure in patients with autosomal dominant polycystic kidney disease ("ADPKD'). 3SBio intends to seek approval from the CFDA to undertake phase one clinical trials in China.

ADPKD is the most frequent hereditary renal disease which affects about 1 in 400 to 1 in 1,000 people. The estimated patient population is approximately 1.5 million in China and 10 million globally. Approximately 50% of people with ADPKD will develop end stage kidney disease and require dialysis or kidney transplantation.

Researchers with the Shanghai Institute of Materia Medica, Chinese Academy of Science discovered and synthesized DJ5 and investigated its effect on disease progression and possible side effects in the Han:SPRD rat model of polycystic kidney disease. They concluded that DJ5 markedly delays the loss of renal function, inhibits the cyst epithelial cell proliferation, and retards cyst development in Han:SPRD rats with ADPKD, without causing cardiac side effects.

Previous studies have shown that PPARgamma agonist Thioglitazones (TZDs) could reduce renal cystogenesis, retard the progression of kidney failure and prolong survival in ADPKD animal models. However, TZDs treatment was associated with fluid retention and heart failure. [Read more]



Read more here: http://www.sacbee.com/2013/10/29/5861044/3sbio-to-develop-dj5-for-progressive.html#storylink=cpy


Read more here: http://www.sacbee.com/2013/10/29/5861044/3sbio-to-develop-dj5-for-progressive.html#storylink=cpy